Monday, 28 October 2013

Families day at Global Care Rukungiri



“Thank you for the care and attention. Other people look negatively on us with our disabled children but you have shown that we matter to you, you treat the children kindly. We shall love you and pray for you. Thank you.”
Comments like this make it feel worthwhile to spend a few pounds buying a drink and a bread roll for children and their guardians and to spend a little time listening to their stories.
“When I go to church the people aren’t happy because of the way my child behaves, and the people in the village won’t come to my house.” It’s not her fault that her daughter has global development problems and can be noisy and disruptive, dribbles and spits. Would you accept this family?
Two girls, one with a deformed ankle and one with a spinal deformity, both report that their schoolmates laugh at them because they look different. Children here customarily walk to school on their own, so those who have impaired mobility have a problem. Even if the parents were willing to take them to and fro, they often have other children and business to attend to.
We haven't seen any wheelchairs yet, though they are needed for some of children we saw, notably those with spina bifida and hydrocephalus.
On the other hand, an 8 year old boy, who is deaf following a bout of meningitis in infancy and cannot speak, is very popular in his community and friends with everyone, though his ability to communicate is limited to rudimentary sign language. His mum was one of two wives so when her husband died unexpectedly without leaving a will, she had to go to court to gain some of the property, and even now is afraid to stay in her former home, lest the other widow might kill her children. She has a little land and income, but even so she will struggle to afford the school fees for the deaf school when her son starts next year.
Death creates other problems. We met an incredibly old looking man with a little girl who was very chatty and sociable despite not being able to stand and having limited vision. She is a double orphan, most likely due to AIDS. It’s hard enough for elderly grandparents caring for a healthy child but when the surgery she needs is only available at the other side of the country and her needs are so great, I couldn’t imagine how they cope, and the future looks grim unless they get some help. Another woman is caring for six grandchildren after her daughter died. One of the children also has HIV. They can get treatment locally but not help with food and livelihoods. This grandmother cannot do much physical work as she lost a foot in a car accident, so even though two of her children are sponsored, she has difficulties making ends meet.
A young woman told how she was beaten and sent back to her parents by her husband’s family after she gave birth to a disabled child. Her family want her to go back to him but she knows that no-one has been able to change his mind about his wife and daughter.
The last person we talked to today left us feeling crushed. Although I often deal with depression, I have rarely seen a man look more defeated. He could hardly speak through his tears and sighs. He arrived cradling his little girl, the firstborn. She is severely disabled and stunted, deaf and cannot walk or hold an object. She doesn’t smile, either. As he has no land, he tries to make a living by hiring himself out as a labourer to dig other people’s land, or by buying and selling a few bananas. His wife has to work too so they have made a kind of pen in their house and lock her in for half a day, cleaning up when they come back. I believe that if she could receive day care, she would be able to develop better, and everyone would be relieved of the guilt and shame we all felt that someone has to live like that.
We are visiting Rukungiri in the hope that Global Care will be able to set up a disability centre here as well as the one in Soroti. The problems are just as great, but extra funding will be needed. Moses said he felt great after today, because we are uncovering the problems we should be dealing with, if we want to help the most needy. If someone reading this is able to help, please get in touch! If you can’t show what Pope Francis recently called “global solidarity” in this way, perhaps you can show kindness and acceptance to a child living with disability or chronic sickness near you.


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